Untold Stories: Life with a Severe Autoimmune Condition
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This podcast features real, eye-opening conversations with people living with rare autoimmune conditions like myasthenia gravis (MG) and chronic inflammatory demyelinating polyneuropathy (CIDP). Host Martine Hackett explores the hardships of diagnosis and each person's journey towards wellness, highlighting the challenges they continue to overcome. The show also includes perspectives from family members and friends who play important roles in their care. It is a production of Ruby Studio from iHeart Media in partnership with argenx.
Episoder
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Alicia: The Long Road to Answers with Seronegative MG 17.06.2026 24minAlicia, an artist and musician living with seronegative MG, shares her story of persistence, self-advocacy, and finding the right support system. Join Martine Hackett as she explores how connection and shared experiences can help people navigate even the most uncertain journeys.See omnystudio.com/listener for privacy information.
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Mel & Lindsay: Different Diagnoses. Shared Experiences. 02.06.2026 27minMel is a dancer living with CIDP. Lindsay is a writer living with dermatomyositis. In this episode, Martine Hackett explores how similar the emotional journey can feel as two people living with different rare diseases navigate uncertainty, self-advocacy, and the challenge of rebuilding their lives.See omnystudio.com/listener for privacy information.
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J’Sean: The Impact of MG with Ocular Symptoms 20.05.2026 29minIn the season premiere, J’Sean shares what it’s like to live with MG with ocular symptoms. Join Martine Hackett as she explores the real impact of ocular symptoms–– and how understanding that impact can help you be heard and find the right support. See omnystudio.com/listener for privacy information.
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Untold Stories is back for Season 6! 13.05.2026 1minMartine Hackett returns with a new season of Untold Stories: Life with a Severe Autoimmune Condition. The best stories unite us, empower us, and help us push forward—against all odds. This season, we’re growing our community, and welcoming voices from myositis and IgAN to the fold. We are stronger, together.See omnystudio.com/listener for privacy information.
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Brandon & Dr. Thawani: The power of shared-decisions 24.12.2025 29minAfter a sudden change in mobility, Brandon Cutrell found himself on an unexpected path toward a CIDP diagnosis. That journey led him to build a remarkable partnership with his neurologist, Dr. Sujata Thawani. In this special episode, Brandon and Dr. Thawani share how trust, advocacy, and shared decision-making make the doctor-patient relationship central to navigating a chronic illness.See omnystudio.com/listener for privacy information.
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Aging With an Autoimmune Disease 10.12.2025 25minWhen Sandy was diagnosed with MG at age 60, she was forced to retire early, leaving behind the job she loved and facing her golden years with unanticipated hurdles. Now 15 years later, Sandy spends her days organizing her local support group, enjoying lunches with her friends, and attending her grandson's sporting events. MG may have thrown a wrench in her retirement plans, but it can’t slow her down for long.See omnystudio.com/listener for privacy information.
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Adapting through Life’s Milestones 26.11.2025 27minAs Britt prepared to give birth to her first child, an unexpected CIDP diagnosis changed everything. Just like that, motherhood looked incredibly different than she had imagined. Hear how Britt learned to walk with her son, fought to regain her strength, and eventually became grateful for all she went through.See omnystudio.com/listener for privacy information.
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Rediscovering Purpose 12.11.2025 29minAfter closing her beloved yoga studio and losing her mother, Tanya Chiu was faced with a new challenge–she was diagnosed with myasthenia gravis. Her story is one of resilience, reclaiming purpose and rediscovering joy when life takes an unexpected turn.See omnystudio.com/listener for privacy information.
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Growing Through Setbacks 29.10.2025 27minTrent was a new father when his life changed overnight, losing the ability to walk, speak or even lift a phone. He spent years in a wheelchair before finding his way back through sport and self-advocacy. Join Martine as Trent shares how he went from paralysis to paratriathlete.See omnystudio.com/listener for privacy information.
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Untold Stories is back for Season Five 22.10.2025 2minSee omnystudio.com/listener for privacy information.
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Community Support Across Borders 01.10.2025 26minLea was just 12 when her symptoms began, but six years passed before doctors finally gave her an MG diagnosis. In that time, she lost the ability to walk, speak, and swallow, yet never lost her determination to live fully. Join Martine as Lea shares her journey from Germany and how the fight to find a diagnosis crosses every border.See omnystudio.com/listener for privacy information.
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Power in Community 17.09.2025 29minCorbin is an engineer who faced a dual diagnosis with a 1.8% survival rate as a problem to solve. He didn’t see despair with that number - he saw a possibility. The possibility that, if he was able to keep living, doctors would find a way to increase that number significantly. He did, and today he’s doing well. Crucial to his determination was the CIDP community, which welcomed him with open arms. Corbin shares how he found his community and his jump from advocating for himself to advocating for a movement. See omnystudio.com/listener for privacy information.
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Understanding Cultural Differences 03.09.2025 29minLeah is a Mexican American who experienced symptoms from slurring her words and choking on food with multiple doctors struggling to see the full picture. In this episode, hear how an MG crisis helped Leah uncover a diagnosis and how she turned that experience into action, building a space for others who may not feel seen.See omnystudio.com/listener for privacy information.
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Navigating connection after diagnosis 20.08.2025 31minJamilah went from daily dance rehearsals to struggling to move through her own home, while her symptoms were continuously dismissed. In this episode, hear how finally getting a diagnosis changed everything: from relearning her body and rebuilding relationships to finding connection again in a whole new way of life.See omnystudio.com/listener for privacy information.
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Balancing caregiving with self-care 06.08.2025 32minJustin is a husband, entrepreneur, and full-time caregiver to his wife, Shawna–– our very first podcast guest. In this episode, Justin talks about what it’s really like to care for someone you love. From juggling nonstop doctor visits to being the go-to advocate in every medical setting, Justin shares how he stays grounded, what keeps him going, and why self-care is survival. See omnystudio.com/listener for privacy information.
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Finding Your Voice In the Healthcare System 23.07.2025 30minJasmine is a career coach, wife, and mother who is newly diagnosed with CIDP but no stranger to fighting for her health. After years of navigating lupus and rheumatoid arthritis, Jasmine learned how to push back, speak up, and keep going. Join Martine for the season 4 premiere as Jasmine shares what it’s like to face a new diagnosis mid-journey, and why she refuses to stay silent.See omnystudio.com/listener for privacy information.
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Untold Stories is back for Season Four! 16.07.2025 1minMartine Hackett returns with a new season of Untold Stories: Life with a Severe Autoimmune Condition. The best stories unite us, empower us, and help us push forward against all odds. This season, we hear from people living with myasthenia gravis (MG) and chronic inflammatory demyelinating polyneuropathy (CIDP) as they reclaim their identities, fight for care, and find strength in both community and themselves. Join us starting July 23rd.See omnystudio.com/listener for privacy information.
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Harnessing Hope: Life Beyond Autoimmune Conditions 23.10.2024 34minFor this special season three finale, Martine is joined by Kathy Perez, Head of Global Patient Advocacy at argenx. They reflect on some of the most impactful and moving moments from guests this season. Kathy asks Martine about her favorite learnings and takeaways as host of the show. While life with autoimmune conditions like MG or CIDP includes a wide range of emotions, Kathy and Martine dig into perhaps the strongest of them all: hope. Whether managing frustrations or juggling the physical changes and pain, hope is what continues to shine through as a beacon for perseverance. Together, Kathy and Martine underscore the transformative power of sharing each untold story, building a strong community, and demonstrating how fostering hope becomes armor for adversity.See omnystudio.com/listener for privacy information.
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Pushing Past Grief: Staying Positive with MG 02.10.2024 22minIn 2007, Tony’s MG journey began with severe double vision, quickly leading to several episodes of pneumonia. He was in and out of the hospital and rehab facilities for many years, only reaching his MG diagnosis in 2014. Through it all, he was supported by his wife and tireless caregiver, Catherine, documenting every step along the way. From the start, Tony remained determined to regain his strength and to raise awareness for MG. His curiosity and drive led him to become a voice for the MG community across Canada. Though his life changed drastically, Tony embraced the grieving process for the life he once knew and found ways to cherish his new reality.See omnystudio.com/listener for privacy information.
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Embracing Gratitude: Remaining Positive in the Face of CIDP 18.09.2024 31minCraig’s CIDP journey began in college when growing symptoms and fatigue halted his running career and confined him to a cane, then a wheelchair. But from the very beginning, Craig remained positive and focused on finding answers. Having seen some videos about CIDP, he worked with his doctor to determine his official diagnosis. Craig’s curiosity and hunger for problem-solving inspired him to explore holistic approaches to supporting his overall health. Now Craig uses his experiences and creativity to pay it forward and connect with others through his own YouTube channel. Though his life took a considerable pivot, Craig navigates his health journey with a bit of humor and a lot of gratitude.See omnystudio.com/listener for privacy information.
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